Unexplained pain - endo?

[MaddieL]

I'm new here but I'm hoping someone might be able to help.

For a few years now, I've experienced intense pains in the week after my period ends. These bouts of pain (in my pelvic area and shooting down my thighs) normally last for between 30 minutes and an hour. They go away without painkillers, but for that 30 minutes or so, I am in such intense pain that I feel faint and barely able to speak or move.

These pains usually start either when I first wake up; after sitting for a long time; after even very light exercise (i.e. walking); or after sex. For that one week after my period, I usually get this pain once or twice a day.

During the rest of my cycle and even in between the pain spurts, I feel fine. My periods are regular (every 26-28 days), but do last quite a long time (6-7 days). I don't think they're particularly heavy, and I only sometimes have cramps on the first day.

I've been to my GP and a gynecologist and have had an ultrasound, and they say they can't see anything wrong. I was given IBS medication, but it didn't help. I've also been told that the pain might be brought on by something psychological, but I've never been diagnosed with any mental health issues so this doesn't seem likely either.

I should also mention that my husband and I have been trying to conceive for three months without success. I'm 30 years old.

I know that I'm only experiencing one of the symptoms linked with endometriosis (pain between periods), but does this sound familiar to anyone here? The persistent pains and lack of diagnosis is really getting me down.

Does anyone have any thoughts on what this could be if not endo? And does anyone have any tips on how to deal psychologically or physically with this chronic pain? Any thoughts would be much appreciated.

[mihaelad]

I started having severe pelvic pain after my period ends about four years ago. As you mentioned, my periods are long and havy also but not very painful. However, as soon as the period ends , day 7-8 I start having the most extreme pain I can imagine located down in my pelvis.. and it normally wakes me up early in the morning. The difference is that my pain doesn't go away by itself in an hour..l normally take Ibuprofen and wait couple of hours to be able to breath again.. I belive the pain is related to estrogen, because it only occurs for 5-6 days before ovulation, when the estrogen is rising.

I had multiple scans, laporoscopy and D&C and I am diagnosed with adenomyosis. My OBGYN ways my uterus is enlarged and bulky..l and I can feel that especially in the time when it hurts.

So far, I didn't find anything to get relief from this pain except Ibuprofen.

I am reading this board every day to find women with similar symptoms but it doesn't seem to be a common endo problem. I feel pretty frustratrated because even my adeno diagnosis is based just on assumptions since hysterectomy is the only only to know for sure it is present or not.

I hope you feel better and please let me know if you find anything else new about this symptom...

[MaddieL in reply to mihaelad]

Thank you so much for your reply. Can I ask how they worked out that your uterus was enlarged? Was this through an ultrasound?

I am going to keep asking my doctor what's wrong, so I'll let you know if they offer any diagnoses or treatments. I was also wondering whether I might have adenomyosis, so that's helpful to hear that you've had a rough diagnosis.

[mihaelad in reply to MaddieL]

I had a laparoscopy and ultrasound and both confirmed the uterus is enlarged and bulky. Just a simple ultrasound and a physical exam can measure the uterus and see if it's enlarged.

Did you ever had any spotting with the pain? or any type of discharge?

[MaddieL in reply to mihaelad]

No, I don't get spotting or anything like that. Just pain.

[Sarahdee1990]

my symptoms were similar to yours for years, I just put it down to messed up periods. Until around a year ago I was admitted into hospital as I could not bear the pain, it literally took over my life! It then took the doctors 6 months to finally diagnose me with endo.

I kept a pain diary for the 6 months whilst they ran various tests, and I noticed that I had the tremendous pains exactly a week before I was due on my period, only spotting on occasion, and also whist having sex and then for a day or 2 after.

I have literally just had the marina coil fitted so I hoping that will help!

[MaddieL in reply to Sarahdee1990]

Thank you for your helpful reply. I've also been keeping a pain diary in the hope that my doctors might take me more seriously.

I always feel that I need to go to hospital when the pain starts, but I know it'll be over within an hour so I never go.

I hope the coil works and stops your pain!